I recently sat down with newly-appointed Oregon Support Services Association Executive Director Kathryn Weit to discuss her history, her thoughts on the brokerage system, the implementation of the K Plan, and where she sees brokerage services headed.

Kathryn has been a hugely influential player in services for people with intellectual and developmental disabilities both in the northwest and nationally. She played an integral role in the development of brokerage services in Oregon and brokerages statewide could not be more pleased that she’s signed on to lead us into Oregon’s next phase of services. Sometimes the best way to figure out where you’re going is to remember how you got where you are. Our conversation started there.

Larry: What did services look like in Oregon twenty years ago?

Kathryn:Looking back fifteen years plus, prior to the filing of the Staley lawsuit and the creation of the brokerage system, Oregon was in the process of downsizing an institution and we had very, very long wait lists.

Larry: Wait lists for community-based-services?

Kathryn:For everything. I use the term wait list loosely because it really never was a wait list. It was a crisis list. If you went into crisis, you got services. There were very few services for adults except group homes. Any family of a child under 18 who needed any kind of support had to go through the Child Welfare system. And they had to say they were on the verge of having to place their family member out of home, usually into foster care. It had to be that serious before there was a possibility of getting in-home supports. The stories you’d hear families tell about trying to survive without any support and then having to say this. It was devastating.

Larry: And your son, Colin – you were in this situation with him, right?

Kathryn:When my son was sixteen, we had a major crisis in the family and we had to go the crisis route. We had to go to Child Welfare and we had to tell people why we couldn’t handle our situation any longer by ourselves. It was one of the hardest things I have ever done in my life.

Larry: And when you say services – what are we talking about here? What did these services look like?

Kathryn:Early on the services through Child Welfare were designed to support families with respite, in home support, and things like behavior support. Later the Developmental Disabilities Program created some very small, grant funded, family support programs for families with children under 18. It was later expanded to include families of adults. Services were extremely limited. For example in Multnomah County there were only fifty families who had access to supports. (Ed: for comparison, there are thousands in services in Multnomah County today.) It was very limited, but it gave advocates a model to draw from. First, someone needing supports got a “guide” (much like a Personal Agent) to help find and engage with community resources. And second, you got a little bit of funding. But for the first time it was funding that was family-controlled. The satisfaction level in that program was incredibly high. People thought it was amazing. And when the state asked, people told them that their “guide” was the most important thing. These pilot programs helped shape some of the understanding of policymakers.

Larry: The structure sounds very much like the structure and services offered by brokerages today.

Kathryn: Yes. Then later, before the Staley lawsuit was filed, the state applied for and received a Robert Wood Johnson Foundation grant. The idea was to look at what was becoming a national agenda in terms of self-determination and to apply some of those principles to adult services. They set up a small model brokerage (Self-Determination Resources Inc.) and this really pushed systems change.
Larry: At the time, over 5,000 people were waiting for services, which led to Staley v. Kitzhaber.

Kathryn:If you consider both adults and children who were eligible but not receiving services, yes. Yes, the lawsuit was based on the fact that there were people who were eligible for services but denied them. The State chose to negotiate a settlement of the lawsuit.

Larry: After the lawsuit was settled, the state set out to develop services for everyone on the wait list. How did the brokerage model emerge?

Kathryn: Oregon chose very specifically to say: “This is Oregon, we have economic ups and downs, we are not a rich state, we cannot afford to provide 24 hour, seven days a week residential services to everybody on our wait list.” Many people don’t need that level of service. We learned that people are good decision makers about what they need in their lives when given support and guidance that’s meaningful to them. A crucial element was that families and individuals with disabilities needed to be in the leadership role. Through much discussion, stakeholders arrived at the conclusion that small, decentralized nonprofit and community-based programs would provide a solid foundation for choice-driven services.

Kathryn:I think that for years we have argued that we needed more resources in the DD system. We all know that there are people with significant support needs who aren’t receiving the level of supports that they actually require and need. We knew that the existing Support Services funding was not adequate for many people. I think the K is an incredible opportunity for Oregon to bring more resources into the state. The challenge is in the implementation.

Larry: Do you think the state expects us to deliver services differently now as a result of the K Plan’s implementation?

Kathryn:Well, additional resources are wonderful but we need to remain focused on the goals, the vision that people with disabilities, with appropriate supports, can create a full life, rich in friends and meaningful community connections, employment and significant relationships. It is what we want for all our children. There’s no reason we have to lose those values, though I believe they are significantly endangered. The K has forced change in what I believe are the fundamentals: self-determination, choice and control. We have moved to a system that is deficits-based. That being said, I think there are ways- could have been ways – that didn’t undermine these cardinal values. Brokerages are committed to keeping the conversation about these values alive. It hasn’t been popular because it isn’t easy. I think we all recognize that any kind of system change is difficult and that the implementation process is the hardest part. That being said I am struck by the lack of planning that has ignored the hydraulics of a lifespan service system, the failure to listen to the lessons learned in the past, and the failure to listen to operational wisdom of stakeholders. The result has caused long-held priorities to be turned inside out. We will continue to push for involvement in these conversations, before decisions are made. It is important to have our core values drive decision-making instead of being after-thoughts that are an inconvenience to the process.

Larry: You mentioned a deficits-based approach. This brings to mind the Functional Needs Assessment or Adult Needs Assessment, which is a tool we now use when people enter brokerage services. The tool measures a person’s support needs and determines what services they’re eligible for. When you think about having a needs assessment completed – well, that’s something many states require. This isn’t a new idea, it’s not out of left field. But what you’re saying is that it’s not the tool that is the concern, it’s the approach.

Kathryn: It’s the implementation that’s the problem. Most states have some kind of assessment like this – a functional needs assessment. I think the key is in how the process gets framed. I recently went through an assessment with my son. I think the person who did it is wonderful and I understand that time is short. But I would have liked to hear “What would he like to be doing? What would he like his life looking like?” It would help focus on the idea that these supports are being offered for a purpose. There is great power in starting an assessment by talking to someone about who they are and what they hope to be. It’s not just powerful for people with disabilities. It informs the way we all think and behave.

Larry: I think brokerages are focusing on goal development first and finding a way to fit the needs assessment in as naturally as possible. It’s a shift and we’re still learning how to make all the pieces fit. One of the bigger concerns right now is that the tool being used is temporary, just a placeholder. This is an untested experience and, as it stands right now, Oregon plans to change the assessment tool we’re currently using and replace it with a different tool by January of next year.

Kathryn:What we must not lose sight of is that this may be just a pilot project in some people’s eyes, but for the people going through this assessment having their support plans radically changed, there is nothing “pilot” about it. This is about their lives. It’s about getting the resources they need and are being told they’re entitled to under the new funding model. I think it’s a really important message that people making these decisions need to understand. This is not a pilot. These are people’s lives. Clearly, the introduction of any new assessment tool and process must be thoroughly planned and implemented in a way that does not disrupt the lives of customers and families or cause chaos in the system. January 2015 is too soon. The dust will have not settled from this last effort.

Stay tuned next week for Part 2 of our talk with Kathryn. She discusses the brokerage response to the K plan, the concern over monthly versus annual budgeting for customer plans, and thoughts on appropriate long-term strategies to assure a sustainable future for services for Oregonians with intellectual and developmental disabilities.